A turn of events in the cancer fight

In November 2013 I received a bit of sobering news, though not entirely unexpected. My cancer is acting up.

Here is the email I sent to family and friends: Hi, I sent this email to my kids earlier today. Here is your copy. What can I say? What is, is. Share with your kids. Thanks for all your support. If you want to talk about it, please ask. You are great, Love, Dan Hi, I had my PSA drawn on November 1. On November 11, Dr. Sershon called me to tell me that the number had jumped. He did not tell me the new number. I can get it in the next few days. It was my choice. The old numbers had always been below.2, or "undetectable". Well. He said he will watch the number at my next PSA draw in March. If it stays up, I will be referred to his associate for further treatment because it probably means there is a clump of cancer in there somewhere. Which of course I already know: The cancer has never gone away completely; that's why the PSA never went to 0. Sershon also explained that the number could go back down, that PSA related to lupron treatments sometimes jumps and goes back. So there is nothing to do but wait to see.

Just to be clear, Sershon is a pretty blunt guy. No mention of "affairs in order" or "bucket list." And I have no such intentions, though a month in Europe sounds good. The last thing he said to me was "Have a good winter," which is exactly what I plan to do.

Please know that I am not afraid nor am I worried. Look at these things head on and don't flinch. I refuse to allow these facts to affect the way I live in the now. And living now means that I am deeply in love with you all and your children, and that I know what that means at a very deep level, and that it is a lot of fun, making for a very fine way to get up in the morning. So, a bit sobering, but having cancer is a bit sobering. Hug, laugh, dance, call me, try new things (I am working, after years of ignoring it, to learn flash photography. I just bought a nice external flash. Tomorrow I can get back to rock climbing. Today I checked out cork flooring for the kitchen.) God it is great to be on the same team as you guys.

Love, Dan, Dad, Doc

February 2012, Cancer is back

Well, that title seems scary, so let me explain. There is good news and bad news. The bad—I still have cancer. The good—it is controllable with no imminent danger.

There, that said, let me explain. First, the cancer. Ever since I ended my radiation treatments, my PSA has been slowly rising. The most recent number (in January 2012) was .29; the time before it was .19. In PSA terms, for people with my cancer history, .20 is the magic number. Below it and no one does anything, above it and they do. Because the number is now above .20 all my doctors (urologist and radiologist and gp) have concluded that radiation did not kill all the cancer cells and that some small amount of cancer cells are still present. And because of the characteristics of my cancer that small amount will have to be controlled or it could metastasize. By characteristics I mean that my cancer was graded as Gleason 9 (out of 10). That number puts my type of cancer in the aggressive category and explains why I have had PSA tests performed every three months. My doctors have been watching closely.

Second, the treatment. Eventually, probably later this year, I will begin a two-year course of treatment called “Intermittent Hormone Therapy.” In that therapy I am injected with Lupron, an estrogen, three times a year for two years. Then there is a year with no injections and then the cycle repeats. Lupron dramatically suppresses testosterone which is one of the “feeders” of prostate cancer. The less T, the less C. The potential side effects are hot flashes, loss of strength and sexual drive, and a dramatic increase in the desire to watch chick flicks.

My urologist is a man I trust completely. He is blunt (one of his quotes at opur recent meeting was ‘that sucks’), clear, and ethical. He walked into our session having obviously closely reviewed my case. He had numbers and dates on the tip of his tongue. He is very clear that I am in no imminent danger and his prognosis was that I would be around a long time. However, all individual cases of cancer are unpredictable and thus something could happen that would cause him to revise his optimism. I’ll cross that bridge when I get to it.

I am happy to have the explanation that I received this morning. Knowledge is a source of strength and of courage against the fear that always accompanies the word cancer. As I have said many times before I am not worried and I am not afraid (I was both quite a few years ago when there was a diagnosis that said I had a good chance of going blind—which I don’t.) Thank you, once again for your support. Hug people you love, and tell them that too.

April 2011 A change

I just this week met with my radiologist. He suggested that I see him again in January. I will see my urologist in July and, the radiologist suggested, I should arrange to see him in July 2012. I was amazed. And, somehow, a lid was lifted off me. I feel better than I have in years. I am not afraid, but, still, there is that awful, well-you-are-good-for-three-months feeling. I have had it the entire time. Each time I go for a psa I fill with concern. What if it really spikes? Then what? Propelled by that, well, fear, or awareness, I have crammed a lot into this past year. We have travelled, I have delved deep into family genealogy, spent as much time as I can with family and especially grandkids, and learned to love each moment.

Here is the deal. My psa has slowly, very incrementally risen over the past year. I am now at .1. The cut off is .2. At that point they can no longer say, Well it is random. At that point it is Well it is back. So each time I go to the psa and hope it will be lower and it has not been. Each time I fantasize about the consequences. And now the radiologist, who strikes me as conservative in his evaluations, has said, Let's go to 6 month intervals instead of three month. I floated out of the office.

I have had the stance throughout this ordeal that I keep having a three-month reprieve. Nothing notable this time, so off you go for another three months. My urologist has used the phrase 'cancer free' with me, but, to be honest, I could only interpret that as 'cancer free for 3 months.' This last encounter has left me basically very uplifted. I am surprised at how all of a sudden I am thinking far in advance--which means what we might do next year--and not focusing on what today and the next few days.

I find, as I have said before, that I am not worried or afraid. What is, is. I know fear and I know its relative anger. I don't have them. I can face this. But I have to tell you that it is ok to face it later, rather than sooner. I want, I find, so desperately to have my grandchildren remember me. And this disease has pushed me into a way of relating to those kids unlike the way either my father or father-in-law related to my kids. I try to be more involved and personal.

And so, off I go into the summer. I still have July's psa to deal with, but whatever it is, will be fine. Over and over I learn the gift of cancer--I love better and I enjoy more. Love you. D

May 2010 the decline continues

This month my psa was drawn again. It is .036. It has dropped minimally since my February psa analysis. That decline continues to be good news. I will have to see my urologist in August, after that draw.

This lower psa makes me glad that I have chosen to retire. Even though I am fascinated by the process of changing a culture and have some success at it, the window of health presented by the numbers make it foolish to not go now. I am looking at the Travel section and the travel magazines with new impulsive attention. I plan to take some of those trips, but in the US and in Canada (Newfoundland) and abroad (Norway).

In addition, the lasting effects of my battle are weight that I am having trouble losing. I have been at 205 or so for months. Hopefully exercising after retirement will bring me down to 190. And ed. This condition remains strong (or weak depending on the outlook). I am not sure how to resolve this. Maybe I will return to cialis. But what I have found is that a marriage based on love, respect, and appreciation can accommodate this condition. And, since my wife is such a fine cook, I can live the old adage "Lovin' don't last, cookin' do.

I am looking forward to a summer of biking and some area travel.

Cancer Free for a Year

I originally wrote the following paragraphs in early February 2010.

I just returned from my yearly urologist checkup. I am cancer free. Thanks to you for all your support. It has been so important over the past two years.

Here are the details. My PSA, which I had drawn in early February, was .04. That is ‘undetectable;’ in my condition anything over .2 is worrisome. Since my radiation treatment the psa has never been as high as that. It is also the second time it has gone down, which is the trend my radiologist said to watch for. The meeting with the urologist was very short. He once again told me that I had made the correct set of decisions by doing surgery first and then radiation. Had it happened in the other sequence, apparently things would have been much worse for me, granted the aggressiveness of the cancer. He also told me that had I waited another year, it would have metastasized, much to my long life detriment. So Mike, Joanne, Michael, Danielle, Morgan and Madison, thanks for throwing that/being willing to dance where I wrecked my knee trying to show off. That’s when they found the cancer. Joan, thanks for insisting that I contact Dr. Sershon. Mark, a hug from the heart.


What next? Well, I keep up the psa every three months and see the Dr. again in a year. If I am still cancer free then (you can see with that choice of words why I am not just totally jumping all over the place), the worst is over. In the meantime, I am the ‘didn’t work’ poster boy for Cialis ads—but I have never seen the point of TWO bathtubs out in the woods. The dr told me he could solve that problem by teaching me how to give myself a shot in the appropriate place, but I told him I would let him know.

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nine months later

It is just about nine months since I finished radiation. So what has happened? Well, to get to what is most important to many people, the ED is still there. The incontinence is gone. The weight I gained is still on. The hemorrhoid is essentially gone, though I have not gone back to eating salads and periodically (like this morning) there is a 'tag' which causes some bleeding and discomfort, but not the YEEOWW! reaction that I had early on. As for ED, I tried cialis in various dosages. It never worked all that well to create EF (erectile function) and it gave me one good headache after another. So I quit. I don't use anything now. We have adapted our life to that reality. Our marriage is not based on sex alone and so we have had other pillars to support us even though the one pillar is not very sturdy.

But let's talk about cancer. Since I finished radiation I have had 3 psa drawings. The first was .001. In other words undetectable. I went gleefully to see my urologist, Dr. Sershon, who threw water on that glee. I was still under the influence of lupron and for all practical purposes the reading did not count. It was being artificially suppressed. The second one, in August, was a shock. It was 0.145. Well, while that seemed like a huge jump, it wasn't a jump into bad territory. For my urologist and my radiologist to be concerned enough to recommend further treatment (or, I suppose, getting my affairs in order) the reading has to be above 0.2. As a result of the reading the urologist did not even call me to comment on the reading. Nothing happened so I continued on with life. Then in November I had another draw. This time the reading was 0.11, down from 0.145 three months ago. This is good. The radiologist, whom I met with later in November (once again, since the reading was below .2 the urologist did not call me), explained that after radiation typically the psa goes up (which mine did) and then starts down (which mine did). That is what is supposed to happen. If it continues it means that the radiation was effective. But it takes a number of psa tests over a period of time to establish a pattern. So I will have a psa taken every three months for the next year, actually five more times until 2011. If the psa gets to 0.1 or lower it is regarded as negligible or even undetectable and as long as it stays in that area, no treatments are recommended. As near as I can tell, it is not possible to get a psa of 0.000. My number has gone from 0.145 to 0.11. It has fallen .03 and if it falls .01 more it will be negligible.

Now how does all this feel? Well, as I have said, I am neither afraid nor worried. I don't wake up in the middle of the night with the hollow fear of death slithering around me. But to say that I pay no attention to these tri-monthly experiences would be false. What I find is that as the time for the drawing approaches, it is difficult to make decisions beyond what I will do today and tomorrow. I tried to think about buying a new car this autumn. No go. I will try again after Christmas, but who knows? At work I through myself into strategic planning, but mostly I found myself (and so did my co-workers) grumpy. Staying in my office all day felt good. Right now, with weeks to go until my next draw in early February, I am pretty carefree. But that tightening will come again. What can I do? what is is. But actually the time after the draw is worse. This time I did not get the results for days. I expected a call from the urologist's office; none came. Even though I had my work done at their place, they told me it would be ten days. And even then I had not heard. When I have the draw in Menomonie, I have the results in two days at most. I heard the reading at the radiologist's. The nurse just said 'oh, your psa was 0.11.' I felt a glow completely unexpectedly. The radiologist told me to come see him in a year. I will see the urologist in February, which will be one year since I finished radiation. Interestingly, I had that same glow after I had the draw at the Woodbury office. Somehow, having the wait over and the draw taken, was a huge relief. I felt so light and airy all the way home. Strange.

During these months life has been wonderful. We went to Europe, met wonderful people in Czech republic and Germany. Will Daniel was born in mid-October. Nate's fortieth birthday and thanksgiving were exuberant. Everyone was here for that event. We had a houseful and I loved it. I am buying trundle beds so no one has to sleep on air mattresses again. Mary and I spent her 67th birthday in the city at the MIA. We had fabulous meals and Cheers-everyone-knows-our-name experiences at two different restaurants. I told the provost that I would retire June 30. We have trips to Seattle and back to Europe--Scandinavia, Germany, Czech Republic, Switzerland, Italy--planned for 2010. Perhaps Hawaii in December 2010. We rented, with Clare, an apartment in Minneapolis, down by the Stone Arch bridge. I still love my job and I can see not only that it is creating some change, but the path to keep the change going.

I can't control what will happen to me. I know I would rather die of cancer than of alzheimers. But I can't dwell on that. There is today, and tomorrow, and then all that time stretching out like those long shadows cast by the trees on winter solstice as the sun reverses direction and starts north toward summer once again. Love. Dan